Responsibilities versus rights

In our current society, groups are clamoring for various rights. The disabled community is no different. Obviously some rights, such as the right to a public school education, should have been available much before 1979. However, as discussed in Phillip K. Howard's The Death of Common Sense, rights can get out of hand. My friend Dr. Rick Langer says that if you want to empower someone give them responsibilities not rights. As soon as I become dependent upon you everything changes. I will expect more of you, I will value you, I will actually need you to fulfill whatever it is that you are doing.

People with disabilities have long been in the position of being reliant upon those without disability to help them. It is those in the not-yet-disabled community who need a little dose of reality when it comes to dependence. I will admit that one of my biggest problems is recognizing my that my "strength" is an illusion in so many ways, particularly in relation to God. As DC Talk says, "the physical world creates a spiritual haze." It takes an effort on my part to see past myself to my utter dependence upon others.

I am also extremely dependent upon my wife Kathi, my children Josh and Amy, and so many others.

One looks upon someone with disability, particularly a severe physical disability and feels sorry for that person, at times because of their dependence upon others. I should look at such a person as I would look at a reflection in a mirror as that is who that person is. She is a physical example of a physical and spiritual reality. I do well to understand that reality.

But I also do well to empower such people by using their gifts within the church. One of the greatest things I can do as a Christian is to pray. People with severe physical disability, for example, have a tremendous opportunity to serve the church in this way (and others) if we will only value them, and also recognize our dependent situation that our strength is an illusion, and by example, our dependence on prayer.

McNair

Using "limited" gifts

"As he looked up, Jesus saw the rich putting their gifts into the temple treasury. He also saw a poor widow put in two very small copper coins. 'I tell you the truth,' he said, 'this poor widow has put in more than all the others. All these people gave their gifts out of their wealth; but she out of her poverty put in all she had to live on.'" (NIV)

The obvious analogy here is that persons on fixed incomes, like individuals with disability living on social security are similar to the widow who gave a small amount which was by comparison was a large amount. I have sat in church when persons with severe mental retardation put a dollar in the offering and saved fifty cents for a donut after church, recognizing that these were probably their two financial splurges for the week. You might say that this is less than the 10% tithe the church has adopted, however, it is the heart of these people which impresses me, not the amount of their gift.

But this verse struck me in another way as I read it this morning. "All these people gave their gifts out of their wealth" caused me to think of other gifts that people without disability have. Gifts like intellect, health, physical strength, social skill, community mobility, understanding of things of the Lord. We often hear that 90% of the work of a church is done by 10% of the people. I honestly think that I have yet to ask a person with a cognitive disability to do something for me and for them to refuse. They are quickly willing to spend their "limited resources" due to disability to do just about anything for the church, for others, whatever might be asked. They are certainly not limited in their desire to serve. Perhaps that is why persons with mental retardation are beginning to gain the reputation of being such good workers.

Through programs such as supported employment, employers are beginning to see that once the worker understands what she is to do, she will be reliable and dependable. As stated elsewhere they will treat an entry level job as a career. There is a movie I once saw about a woman with cerebral palsy and mild mental retardation. After years of training she was finally able to get a job as a ticket taker in a movie theater. Her comment upon receiving the job, and being able to hold it for several years was, "To you this might seem like a small thing but to me this is my life."

In Jesus' example of the widow, I think there are at least three take home lessons. One is to celebrate the gifts of those who aren't as gifted. The second is apply her example of sacrafice to ourselves in the way we use all that we have been given. The third is to provide opportunities for those who perhaps aren't as gifted to express their gifts. If your standard for participation is always and only excellence, then only a few will be able to participate. Imagine if the minimal standard for giving in Jesus' time had been a silver coin rather than any gift. The copper coins the widow sacraficed to give would never have been given and therefore never used. Her desire to give to God might have gone ignored. However, if your standard is meeting the desire to give or to serve then all can potentially be involved. If people with cognitive disabilities in my church have the desire to serve but no opportunities are available, then it is my fault, the church's fault not theirs.

McNair

Expectations of the rank and file

One of the things I have wondered about over the years, is what is the rank and file Christian's responsibility toward persons with disability in the church? There are people like myself who have chosen this area of ministry (or have been guided to this area of ministry) but what of people who have not taken this on as their focus of ministry?

A friend of mine has given his life to cross cultural missions particularly in foreign countries. He once said that if people were truly serious about their faith they would give themselves to this area of ministry. I responded that from my perspective if people were truly serious about their faith they would give themselves to ministry to persons with disability. Obviously we were both wrong. God calls each of us to different areas of ministry. Our role is to find that area and spend ourselves in that area.

However, the idea of the responsibility we each have in foreign missions might help to understand our roles in other areas of ministy. I am by no means the role model for service to the local church, but it helps me to consider what I might expect of others by thinking what God might expect of me, what others expect of me and what I expect of myself relative to ministries developed by the church.
1. I should recognize that the people involved in ministry have somehow experienced a call to that area of ministry. It is therefore a priority for them and I should respect them for responding to that area.
2. I should support their efforts through prayer, financial support as I am able, and perhaps even occasional service.
3. I should take the time to understand their mission, their goals and how I might support them in some way by what I do.

But I also think there is a larger question in disability ministry as the focus of the ministry is present at the church. People go somewhere to do foreign missions. People with disability are regular members within my midst, at my church. What are the rank and file's responsibilities toward these individuals in their midst? It is interesting how passionate people suddenly become about disability when disability visits their family. Obviously one cannot be passionate about everything, and of course I will take a greater interest in diabetes if my father has it, or in India if my daughter is serving in ministry there. But is there some middle ground of interest, support, service that I might engage in even if disability ministry is not the focus of my life?

I have been coming to a growing realization that when I set foot on my church's campus on Sunday mornings, that I am not there for me. Well I am there for me but it is all not about me. Of course there is the worship service which should focus on God, but there are also other interactions with people, and I am not the focus of those interactions. I guess when I buy my donut and coffee I focus on myself (I have become so predictable that the donut lady has my favorite one waiting for me each Sunday!). But when people talk to me, I try to listen. I try to make other's smile with my silliness. I try to teach people with disabilities about the Lord. I try to make others with severe cognitive disabilities feel welcome as they go through their personal church rituals (see May 22). I try to be accepting and encouraging. At times I will take someone out to lunch later in the week or give them a phone call.

I guess these are the kinds of things I should expect of regular church members. As a rule, at least at my church, they are doing a pretty good job.

McNair

People with disabilities need advocates

It's true. People with disabilities need advocates. I never cease to be amazed at the manner in which the agencies who purport to help persons with disabilities sometimes don't help to the the extent they are able, and at times actually can hurt.

I was recently at an individualized education plan (IEP) meeting for a young girl with down syndrome. By law, the education of persons receiving special education is to be individualized partially because these idividuals have demonstrated that have difficulty being successful under the regular curriculum and also because oftentimes very specialized approaches are necessary. Anyway, in this meeting diagnostic information was shared about the girl. The teacher indicated that the student only knew about 10 letters of the alphabet (although at the meeting she wasn't sure which those were) and could barely write her name. However, the objective for the IEP was that the student would remember to place spaces between words when she is copying a paragraph from the blackboard. OK, so the most important thing (among others which made their way into the education plan) was that a girl who didn't know letters would successfully place spaces between words in a copied paragraph. Does this strike you as somewhat silly? Even the parents, two intelligent people, didn't speak up about the objective at the meeting until I spoke up.

In a different situation, an adult woman with mental retardation in the mild to moderate range was living on her own in an apartment with about 3 cats. I know it was three, although my nose told me there had to have been more cats in that apartment. The landlord of the complex decided that pets would no longer be permitted in the complex. Tenants were given 2 monts to get rid of their pets. I recognize that this is difficult, however, that was the rule. The woman I knew insisted that she wouldn't get rid of her cats. When case workers from the state attempted to help her to even discuss the possibility, she became verbally abusive. At that point the case workers no longer attempted to work with the woman to get rid of her cats. This is an evil thing to me as they knew what the logical progression of things would be for that woman. Although she had lived for nearly 10 years on her own, she would be evicted from her apartment. Upon being evicted, she would loose her ability to receive reduced rent from the government. Without the ability to receive reduced rent, she would not be able to afford to live in an apartment. Unable to live in an apartment she would be forced to live in a group home for individuals with much more severe disabilities and much less freedom. In some convoluted kind of way, the woman would be receiving the natural consequences of her choices, even though I am confident she wasn't entirely aware either of her choices or the implications of her choices. The approach of the state agency set her up for failure, she failed (according to them) and as a result she was set back, probably at least 10 years in progressing to the level of independence she had been enjoying.

It takes getting to know persons with disabilities and the system to some extent, however, the church is littered with people like myself who have the knowledge and ability to be an advocate. This is a way in which the church can stand up for social justice for a disenfranchised and disadvantaged group of people. Christian social service workers and teachers, does your service end with your exit from your office or school, or can you work to advocate for those who aren't your clients after hours and at other times, even if it means taking on your own state agency?

McNair

Overcoming a notorious reputation: Roy and me part 2

Well, once again I met Roy and we went off to his 4th grade Sunday School class. His parents were concerned because he had eaten some sweets that morning, which appear to be a trigger for inappropriate behavior. I was happy that he was either resigned to or pleased about the fact that his big, balding, bearded, buddy would be again following him to Sunday school. We walked in, and the sign in sheet wasn't there. Small things such as this can at times be the trigger for children with autism to engage in behavioral problems. Roy took it in stride and went to sit down in his usual spot. I went and sat by him. A young girl with down syndrome sat nearby with her adult woman buddy in tow.

The teacher entered the room and said "There will be lots of chances to win candy today!" I immediately realized that I didn't fulfil my pledge on this blog (see May 17) to have something else available. I got up and scurried around looking for chips or something that Roy could win. Finally I spoke to someone in charge and she came up with the idea of shiny new pencils that they had. I sat down. The sign in sheet arrived and he got up and signed us both in.

We sang some songs, some of which Roy knew, to the point of being willing to go forward and "lead" the songs with other kids. When he would do particular motions to the songs, I did them as well. He began to look to me to mimic his motions. At one point I asked him if he could read the words which were being projected and he said "No." However, he then picked up a flyer about some trip and proceeded to pick out words he knew. He saw the word "ball" in balloon and was pleased to know the whole word. He also loved the phrase "baby wipes" which he read repeatedly to himself with delight.

The leader asked questions and the kids were to jump up, provide the answer and receive a candy. I don't recall the question, but on one of them, Roy was the first one up. He also answered the question correctly! The teacher approached him with the pencils, but he indicated that he wanted a candy. The teacher's assistant came forward and gave him a small candy bar. He took it and put it by a pin wheel he had been carrying. The session continued on and occasionally kids would go forward and exchange their candy for something more desirable. Noticing this, Roy went forward and traded his candy bar for a taffy apple sucker (good trade!). He brought it back and once again set it down. My mind kept telling me that he has problems if he eats sweets, but he hadn't actually eaten the sucker. Finally, the class ended and students were able to chose another candy. Roy went forward and chose a tootsie pop (another good choice) and put it in his pocket with the other sucker. I looked at him somewhat surprised. I guess he could read my mind as he commented, "I am going to a birthday party today and these are for my friend."

As I left him off with his parents I told them about the suckers he had in his pocket half because I wanted them to know he had them so he wouldn't eat them, but more so they could recognize how thoughtful he was to think of someone else in the midst of a situation where I guarantee you the other children (me too for that matter if I had been allowed to stand and win a candy) were thinking of their desire for candy, of themselves.

More to come.

McNair

Is learning disability the result of sin?

I want to return to Matthew Phelps article in the Spring 2004 issue of the Christian Scholar's Review. As I reported, last blog, he states,
"More extreme deficits due to diseases or disorders, such as Alzheimer's disease, a hippocampal injury, attention-deficit disorder, or learning disabilities are a result of the Fall according to my view. They are not part of the way things are supposed to be."

The notion of a detectable disability being a part of the fall raises some interesting issues. The history of intelligence testing reveals that prior to the early 1900's learning disabilities were not even recognized. I suspect that people always experienced difficulty with learning, however, the recognition of low IQ did not even occur till about a hundred years ago, with the actual label of "learning disability" being coined by Dr. Samuel Kirk many years later (I had the opportunity to meet Dr. Kirk before his death. He was a interesting insightful man). This recognition also related to the urbanization of society, particularly in America.

In a previous post I noted the fact that an individual with mental retardation who is a friend of mine is not sure whether or not he has a disability (see May 18th) although I see him as disabled. I made the point that that is a problem both for me and for the Church. Seeing someone in a particular way implies a form of stereotyping and the accompanying baggage that goes along with that perception. As much as I might want to be egalitarian, there is a difference in my relationships with persons with cognitive disability and those without. We talk about the same things, often do the same things, but there is still a difference which although it accompanies my perception of disability is not necessarily related to my friends' disabilities.

So, going back to intelligence testing, a point came where a group of people who weren't disabled suddenly were, on the basis of a test of their intelligence. We also find that many of these people really weren't disabled, but were being tested in a language other than their primary language, or using cultural language, metaphor and history with which they were unfamiliar. It seems in these cases, the result of the Fall was the development of the tests not the disability of the persons.

This brings me to my point. If I look at something, and I perceive it as evil or as a result of the Fall or the result of evil, it colors my perception of the reality of that thing I am observing as well as the manner in which I will categorize, describe, interact, etc. with that thing. If disability is often a societal construct (see May 18th again) and not necessarily a negative characteristic of an individual I need to re-evaluate the societal construct, not the individual. A couple of examples.

In Steinbeck's Of Mice and Men, Lenny is a large man with cognitive disability (mental retardation). I particularly loved the movie adaptation of the book (the most recent one) as it displayed Lenny's competence as a worker. When others were struggling to haul bags of grain, he could take two at a time and toss them easily into the wagon. From the employer's perspective who was the better worker? Knowing many workers with mental retardation, I would also add that these individuals rarely complain about their wages, and treat their entry level job as a career.

Then, there was a research study done about social skills and workers with mental retardation. You see the literature indicates that most persons with mental retardation loose their jobs due to minor social skill deficits. The researchers in the Chicago area went to a jobsite where a man with mental retardation was working. They asked the boss and coworkers, "If you could change anything about Joe, what would it be?" They replied that he repeated topics too much at break and other times during the day. Can you even imagine your boss calling you in and saying, "Sorry, we have to let you go because you repeat topics too much." Yet, that can be the criteria to fire workers with disabilities. Anyway, imagine Joe talking about the Cubs or something "too much." Well the researchers measured the amount of times the coworkers repeated topics and used that level as the criterion by which they would measure success for Joe. By the end of the study, Joe was talking about the Cubs no more or no less than the other workers. When the researchers went back and asked the employer and coworkers about how Joe was doing, they replied there was no difference.

Perception is everything. One must first determine where the problem is before one can formulate an intervention to address the problem. Are learning disabilities or mental retardation a result of the Fall? I am not entirely sure. I am less sure than Matthew Phelps about what should be included in the range of normal because I know too many "disabled" people who seem to get more normal the better I know them. However, I am sure that the manner in which persons with learning disabilities, mental retardation or other disabilities are treated by society, including the church, is most definately a result of the Fall.

McNair

Pre-Fall normal vs. post-Fall normal

In the Spring 2004 issue of the Christian Scholar's Review, Matthew Phelps takes on the notion of memory as it relates to a high or low view of human beings. He states,
"Nevertheless, even if one grants that cognitive limitations are not best characterized as sins, or as moral evil, they still need to be distinguished from general effects of the Fall; that is, from natural evil. Let me first note that my claim that memory limitations are good applies only to those limitations within the normal range of variability in human capacities. More extreme deficits due to diseases or disorders, such as Alzheimer's disease, a hippocampal injury, attention-deficit disorder, or learning disabilities are a result of the Fall according to my view. They are not part of the way things are supposed to be."

In this discussion Phelps is once again largely speaking of variations in memory functions as the limitations or ranges of human functioning. He goes on to say,
"On the other hand, I view normal limitations as part of the way things are supposed to be, rather than as Fall-induced perversions of the mind. If cognitive limitations are not sins, and if they are an original aspect of the created order, then they are more than merely not evil; they are in fact good. They are good because they were created by a good God. They are good because human beings are supposed to be limited."

This immediately begs two questions in my mind. First, what is the range of normal variation. You might counter, "What difference does it make?" I just wonder what level of cognitive functioning, in terms of deficit might be considered within the normal range, and what level is a result of the fall? What range is a part of the created "good." What range is the result of the Fall. Unfortunately we have only two examples of pre-Fall humans. We note variations in sex, and perhaps others one might glean from the Genesis account, however, other aspects of human variation not due to the Fall are hidden if only because of the number of pre-Fall people.

A second question relates to ranges of normal functioning that Jesus as fully man would have experienced. Isaiah 53:2 makes the following prediction about Jesus' coming. "He has no form nor magnificance that we should see him; nor form that we should desire him." This implies that not only was Jesus within the normal range of human appearance, he was in the middle to lower range. He experienced the range of normal in appearance. When you read about the level of beating he sustained, and the way he was able to survive to the cross, it gives the impression he had physical strength perhaps in the higher range of normal in being able to survive physical abuse. His teaching, words, and cleverness in interacting with his detractors give the impression that he was in the high range in terms of intelligence (let alone wisdom). Physiologically and mentally he had a strength in the high range to be able to fast as he did.

Mental retardation is defined as "subaverage general intellectual functioning with accompanying deficits in adaptive behavior." Low IQ typically means 2 standard deviations below the mean. Deficits in adaptive behavior are relatively standard, although for example, some children walk at 1 year and some at 2 years.

So, I wonder what the Fall did to change the criteria of what is normal/good functioning.

McNair

Fowler's Stages of Faith (part 6 of 6)

We conclude this discussion of James W. Fowler's Stages of Faith (1995), with a discussion of Stage 6 Universalizing faith. Some bullet points about Stage 6 faith from Fowler.

-In order to characterize Stage 6 we need to focus more sharply on the dialectical or paradoxical features of Stage 5 faith. Stage 5 can see injustice in sharply etched terms because it has been apprehended by an enlarged awareness of the demands of justice and their implications. It can recognize partial truths and their limitations because it has been apprehended by a more comprehensive vision of truth. It can appreciate and cherish symbols, myths and rituals in a new depth because it has been apprehended in some measure by the depth of reality to which symbols refer and which they mediate. It sees the fractures and divisions of the human family with vivid pain because it has been apprehended by the possibility of an inclusive commonwealth of being.
-the self at Stage 6 engages in spending and being spent for the transformation of present reality in the direction of a transcendent actuality
-Stage 6 is exceedingly rare
-they are "contagious" in the sense that they create zones of liberation from the social, political, economic and ideological shackles we place and endure on human futurity

Who, you might ask, are examples of persons achieving Stage 6 faith? Fowler states,
". . .I refer to Ghandi, to Martin Luther King Jr., in the last years of his life and to Mother Teresa of Calcutta. I am also inclined to point to Dag Hammarskjold, Deitrich Bonhoeffer, Abraham Heschel and Thomas Merton. There must be many others, not so well known to us, whose lives exhibit the qualities of Stage 6."

The little I know of him, perhaps Jean Vanier might be a person of faith who has spent himself for persons with disability. There is a great deal of information about him available on the internet as well as the L'Arche communities he has founded.

Like Vanier, I see a link between faith and involvement with persons with disability. My faith is a motivating force behind my desire to see social justice for disinfranchised people, particularly those with disability. How will you and I spend ourselves in this noble cause?

McNair

Fowler's Stages of Faith (part 5 of 6)

We continue with James W. Fowler's Stages of Faith (1995), looking at faith development.

Stage 5 is Conjunctive faith. Some bullet points about Stage 5 faith from Fowler.
-a reclaiming and reworking of one's past
-involves a critical recognition of one's social unconscious - the myths, ideal images and prejudices built deeply into the self-system by virtue of one's nurture within a particular social class, religious tradition, ethnic group or the like
-unusual before mid-life knows the sacrament of defeat and the reality of irrevocable commitments and acts
-it generates and maintains vulnerability to the strange truths of those who are "other"
-ready for closeness to that which is different and threatening to self and outlook (including new depths of experience in spirituality and religious revelation), this stage's commitment to justice is freed from the confines of tribe, class, religious community or nation
-with the seriousness that can arise when life is more than half over, this stage is ready to spend and be spent for the cause of conserving and cultivating the possibility of others' generating identity and meaning
-a capacity to see and be in one's or one's group's most powerful meanings, while simultaneously recognizing that they are relative, partial and inevitably distorting apprehensions of transcendent reality

Clearly persons with cognitive disabilities can know the "sacrament of defeat and the reality of irrevocable commitments and acts." I think I have also seen glimpses of a willingness to "spend and be spent for the cause of conserving and cultivating the possibility of others' generating identity and meaning." When focused, the commitment to faith of persons with mental retardation can be breathtaking. In leading classes for these individuals I have often shaken my head in wonder at the wisdom God can reveal to these people.

I sometimes think about the manner in which Christian faith has been so intellectualized. This is not to disdain indepth study of theology or the desire to plumb the depth of God's word. However, what is the contribution of intellect to faith and the supposed correlation between intellect and behavior. I can tell you that after nearly 30 years as student or faculty in the university, knowledge is not the answer to the world's problems. The pettiness of highly educated people is juvenile. Yet, we seem to think that if someone doesn't understand a concept that implies a shallowness of faith. If I don't understand or can't relate the importance of the bodily resurrection of Jesus, for example, my faith is somehow less than someone who can "see and be in one's or one's group's most powerful meanings, while simultaneously recognizing that they are relative, partial and inevitably distorting apprehensions of transcendent reality." If one must understand such statements to have a deep faith, many never will.

What was the faith level of the little high school girl, Cassie Bernal, at Columbine High School who forfeited her life when she wouldn't denounce her belief in God? She hadn't reached midlife, or perhaps even considered the kinds of issues described above. But could her faith be questioned? What level of faith have you achieved when you are willing to die for your faith? We will see this type of commitment in Level 6, however, the implication for developmental sequences is that you need to somehow move through the levels to achieve a higher level faith.

In my first posting on this blog, I mention the fact that many feel that persons with severe mental retardation are automatically accepted by God as they will not have the opportunity to make a decision intellectually or any other way for God due to their disability. I am curious about what level of faith this is?

For myself, I can think through the issues mentioned for Stage 5.
I wonder how my "myths, ideal images and prejudices" impact the way I express my faith. I hope that my commitment to justice "is freed from the confines of tribe, class, religious community or nation." I wonder whether I reflect on "powerful meanings, while simultaneously recognizing that they are relative, partial and inevitably distorting apprehensions of transcendent reality." God forbid that my "through a glass darkly" image of God is who God really is. I often wonder what the obvious thing is, that the church is missing right now? Something which later generations will look back on and shake their heads saying "How could they have gotten that wrong?"

As I have said at other times in this blog, it may be the future head shakers will be thinking about church's lack of inclusion, acceptance and ministry to persons with disabilities of all types. At least that is what I see.

McNair

Fowler's Stages of Faith (part 4 of 6)

We continue with James W. Fowler's Stages of Faith (1995), looking at faith development.

Today we look at an overview of Stage 4: Individuative-Reflective faith. Some bullet points about Stage 4 faith from Fowler.
-the late adolescent or adult must begin to take seriously the burden of resonsibility for his or her own commitments, lifestyle, beliefs and attitudes
-unavoidable tensions
individuality versus being defined by a group or group
membership
subjectivity and the power of one's strongly felt but
unexamined feelings versus objectivity and the
requirement of critical reflection
self-fulfillment or self-actualization as a primary concern
versus service to and being for others
the question of being committed to the reltive versus
struggle with the possibility of an absolute
-disillusionment with one's compromises and recognition that life is more complex than Stage 4's logic of clear distinctions and abstract concepts can comprehend, press one toward a more dialectical and multilevel approach to life truth

I think it is quite rare for an individual with cognitive deficits to be able to function at this level of faith. Tensions between individuality and group membership, subjectivity and critical reflection, and the ability to interact with notions of absolutes and things which are relative are difficult for this group. Internal conflicts between self-actualization versus service to and being for others do find their way into discussions of the acting out faith for these individuals. The notion of helping others is very important in the lives of persons with cognitive disabilities, perhaps because of the help they have received and have benefitted from, or perhaps in the self-actualization they feel in helping others, or in being depended upon. Whatever the reason, the notion of helping others is very important.

Perhaps due to an inability to organize themselves, or a recognition of their own need, group membership is typically desired above individuality. In some ways, group membership might be considered the highest ideal, in that it implies a certain level of competence. Individuality is evidence of a disconnectedness from others due to the severity of a disability, or an inability to connect with others. However, one must look at both connectedness between persons with and without disability, and connectedness within the disabled community itself. Adults with cognitive disabilities like to talk about the fact that they are a member of a Bible Study, or a member of a social club or a member of a church. To them it doesn't necessarily imply a subjugating of their life perspective to be identified with a group, rather, it implies that they are likeable people who have lots of friends, another high ideal.

They will distance themselves from individuals or groups if they feel they are being taken advantage of (should they be able to detect that) and at times on the basis personal philosophy about right and wrong.

Finally, I do believe that they sometimes recognize a more dialectical and multilevel approach to life truth, but rather than struggling with the conflict, they simply live with the paradox. For example, a man I know told me that, "My family allows me to live in their garage, but they steal my money." These conflicting perspectives, one of "caring" and one of taking advantage of coexist without resolution, and are simply accepted as the status quo. Perhaps this is because the individual values group membership over confrontation, recognizes his dependency, or lacks the confidence that he is actually perceiving the situation correctly.

McNair

Fowler's Stages of Faith (part 3 of 6)

We continue with James W. Fowler's Stages of Faith (1995), looking at faith development.

Today we look at an overview of Stage 3: Synthetic-Conventional faith. Some bullet points about Stage 3 faith from Fowler.
-a person's experience extends beyond the family
-faith must synthesize values and information; it must provide a basis for identity and outlook
-typically has its rise and ascendency in adolescence, but for many adults it becomes a permanent place of residence a person has an "ideology," a more or less consistent clustering of values and beliefs, but he or she has not objectified it for examination and in a sense is unaware of having it
-the experience of "leaving home" - emotionally or physically, or both - precipitates the kind of examination of self, background, and life guiding values that gives rise to state transition at this point
-differences of outlook with others are experienced as differences in "kind" of person


People with cognitive disabilities rarely achieve this level of faith, from my experience, largely because of the dependency they feel on family or significant others. The "leaving home" experience rarely occurs. An adult friend of mine, an individual who although he cannot read, is able to take care of himself quite well illustrates this point. At age 60, he would still call his mother to find out whether or not he should wear his sweater, or leave his apartment at all. His mother was not a person who would dominate her son with her will, it was simply that he has never really became a totally free functioning adult. This example points to issues of physical or emotional leaving, however, the same can be said in these individuals relative to their spiritual devleopment.

It takes a high functioning individual indeed to ignore the perspective, will, desires of their parent and go off on her own direction. Adults with cognitive disability rarely have the ability to do this. Some of this grows out of their dependency on non disabled others. They are dependent for their budgeting, so they are also dependent for their faith.

For example, often a person with mental retardation's perspective is reflective of the last person he spoke to. I have had many conversations with individual with cognitive disabilities,where we have come to an agreement on an issue, only to have that perspective totally changed via conversation with someone else. It is as if the previous conversation had never occurred. The most graphic example of this was in a situation with an adult with mild to moderate cognitive disabilties whom I had assisted to receive Social Security. He and I had been planning for months about what he would do once he received the back payments which were due to him. Up to the final minute (so to speak) that he was to receive the money, he was to contact me, and we would withdraw some of the money for his personal use, and discuss the purchase of housing for him with the remainder. I will never forget receiving the call from the state worker telling me that he was about to take my friend out to buy some furniture. I became angry telling him that my friend and I had been discussing what he would do with the money for months. He replied, "No, you don't get it. I want to help him buy something while there is some money left." My friend had spent 18,000$ in about 24 hours. His family had basically convinced him that he owed it to them and took it from him.

As with faith, the personal ideology is often weak at best. With growth, change can be made.

Over the past few years, another friend of mine, a man with cognitive disabilities has grown significantly in his faith. He had gained the assertiveness to turn away temptations of a variety of sorts by saying, "You don't know me" or "I don't think I want to." These are two quite powerful phrases from a faith standpoint illustrating that his personal beliefs have grown to the point of being somewhat understood and synthesized. He also sees people with the group orientation mentioned by Fowler. They are either in his group or not in his group. This also implies some level of understanding about who his group is. There is a greater trust of those within his group than those outside. He is still reliant on family members for some basic decision making and rarely will do anything other than what they would request.

Perhaps the highest function member of a group of individuals I work with at my church is a woman who has made the decision to attend church. Her parents apparently tease her regularly, and tell her that going to church is foolish, etc. She, however, has decided that it is an important aspect of her life, and has the intellect and courage to maintain the relationship with her parents while also expressing her personal faith.

McNair

Fowler's Stages of Faith (part 2 of 6)

We continue with James W. Fowler's Stages of Faith (1995), looking at faith development.

Today we look at an overview of Stage 2: Mythic-Literal Faith. Some bullet points about Stage 2 faith from Fowler.
-persons begin to take on for him- or herself the stories, beliefs and observations that symbolize belonging to his or her community
-beliefs are appropriated with literal interpretations, as are moral rules and attitudes
-marked by increased accuracy in taking the perspective of others
-reciprocal fairness and an immanent justice based on reciprocity
-the new capacity or strength in this stage is the rise of narrative and the emergence of story, drama and myth as ways of finding and giving coherence to experience
-limitations of literalness and an excessive reliance upon reciprocity can result in "works righteousness"
-conflicts between authoritative stories (creation/evolution) must be faced
-this is the faith of the school child (though we sometimes find the structures dominant in adolescents and in adults)

This stage of faith is common among many individuals with cognitive deficits. Over time they have learned Bible stories and remember the lessons of the stories. Stories become a point of connection with the larger church body. The same stories told at the congregational worship service are told during the program for adults with disabilities. One learns that all are under the same behavioral standard, leading to what should be a an experience of reciprocity within the group. Moral rules are applied to the group independent of social position or disabilty which resonates with the notion of equity portrayed in the stories of the community.

As the faith's notions of right and wrong are internalized, adherants are quick to say that something is right or wrong through the application of the learned standards.

Presentation of the Christian faith to this group is the delightful introduction to a world of stories of real people having real experiences. The lessons of these experiences are directly applicable to the listener's life. One finds that he is a part of history of those who have gone before. This perspective provides a past and a future.

The presentation of a moral code is helpful to a group who might not otherwise have been able to determine right from wrong. They receive a confidence from having done the right thing, learn to expect the best from others of their faith, and are able to provide an explanation for the behavior of those outside of the faith which satisfies themselves. This standard helps them to see growth in themselves and actually helps them to speak boldly to others about their own faith. A common comment from adults with disabilities who have been teased or verbally abused is a simple, "He needs the Lord." The implication being that with an understanding of the things of the Lord (the stories, behavioral standards, etc.) the offending individual would understand the principle of moral and behavioral reciprocity and would stop the inappropriate behavior. A similar comment often made regarding persons who are negative towards people with cognitive disability is, "He doesn't know how I feel," or "She doesn't know what it is like to have a disability." The assumption is that if he or she did know, they would adjust their behavior.

As in the previous stage, there is the participation in ritual, however, as in Stage 1 the rituals may be specific to an individual, his own perception of what faith is, and therefore actually unrelated to the traditional rituals of the faith. In Stage 2, there is understanding of the actual rituals of the faith (prayer or sacraments like communion or baptism). They are a part of the narrative which is learned and embraced.

McNair

Fowler's Stages of Faith (part 1 of 6)

James W. Fowler in his book Stages of Faith (1995), describes what might be called faith development. Movement deeper into faith. I thought it might be interesting to consider his 6 faith stages as they relate persons with disabilities, their families and their supporters.

Today we will begin the discussion with an overiview of Stage 1: Intuitive-Projective faith. Some bullet points about Stage 1 faith from Fowler.
-fantasy filled, imitative phase
-most typical of children 3-7
-imaginative processes underlying fantasy are unrestrained and uninhibited by logical thought
-the stage of first self-awareness
-first awareness of death and sex and the strong taboos by which cultures and families insulate these powerful areas
-emergent strength of this stage is the birth of imagination
-transition precipitated by emergence of concrete operational thinking and a growing need to know how things are, distinguishing between what is real an what only seems to be.

In relation to persons with cognitive disabilities several of the bullet points stand out. The notions of fantasy unrestrained by logical thought, imitation, self-awareness, cultural values and distinguishing reality. Lets discuss each of these briefly.

Fantasy unrestrained by logical thought can be seen in the blurring of reality and fantasy. Individuals with severe cognitive disability will look at television programs, whatever the subject, and perceive what is viewed as reality. They haven't the framework or the capacity to make discriminations between what is real and what isn't. We will sometimes play act a story in our program for adults. Perhaps I will act as if I am taking someone's posession, or making a rude comment. Individuals in the class will at times physically prevent me from taking the object from another, or worry what will happen if my wife finds out. They verbaly state that they understand that I am just "pretending," however, their actions betray the fact that they aren't sure.

Self-awareness is observed in their requesting something they desire, asking that someone refrain from doing something to them, discussing their likes and dislikes.

Sex as a behavioral issue is often a point of discussion. Largely in respons to a desire to do what is modeled as right both through the lives of persons known to them and what is explained from the Bible. They are quick to relay Biblical perspectives on what is right for themselves or others.

The birth of imagination is critical in this phase and its absence is evidenced often in a lack of understanding of the most basic of issues.

A growing ability to perceive what is real indicates the beginning of a transition to State 2. People will speak with great excitement about something they have observed in a television program or movie, but when asked about the reality of the situation, will be called back, and say, that they understand it was just a story.

Presentation of the Christian faith to this group revolves around basic stories, examples and illustrations about how one should act and live. Fantasy is avoided as it will not be perceived as such. Even jokes are very grounded, if they are shared at all. Someone might say, "you are a monkey" and laugh although even this type of a statement might tax the ability to discriminate in order to see the humor.

For those with severe cognitive disabilities, interactions are very direct, hands on and inclusive. "I am glad you are here" with a hand shake or a hug is perhaps all that is remembered.

One man in our group has a pattern when visiting church. It might be said that this is how he expresses his "faith." Upon arriving, he comes up to me and gives me a hug. I say "I am glad you are here." He says "Donut." I respond, "Go sit down and I will bring you a donut. Do you want coffee?" He says "Coffee." Later in the midst of the Bible lesson, he will walk to the front and say "Pizza" or "Hot dog" and I will respond "Are you going to have a hot dog for lunch" the key being the repitition of the food item he has mentioned. He will repeat the name of the food until I get it right and restate it. He then goes and sits down again. When we make the hand motion regarding 3-5 for Proverbs 3:5 he will attempt the motion. For him "faith" is the participation in a ritual with a group of people who are accepting to him. Expectations on my part as a facilitator of spiritual development, are that he will feel welcomed, feel that he was listened to, and ensure that the ritual he has come to expect which he has associated with church occurs in the manner which he expects. At times he will be confronted with actual "theological" content. On several occasions while at church he will hit someone. I will separate him from the group and say to him "No hitting." Perhaps this is a proscription against a behavior which he associates with me (the Sunday School teacher) or the church, however, more likely it is a standard enforced across his life.

Interestingly, this is a behavior pattern which is generalized across all of his interactions with me. He does not engage in these behaviors with others in the church situation or other social settings. However, it is consistent with me where ever we happen to be together. So his "faith" may be more of a behavioral pattern associated with an individual. As with anyone's faith, the difficult part to determine is what he is bringing to the interaction.

McNair

A glimpse of a future

In my professional writing I have spoken of the potential the church holds as a place of support for adults with developmental disabilities (several of these articles are available at this address http://www.jeffmcnair.com/CSRD/articlesofinterest.htm). Here are a few of the things I have observed.
-Over 50% of developmentally disabled adults surveyed reported attending church in the last seven days.
-Over 80% of churches surveyed reported having individuals with developmental disabilities in their congregations.
-Churches provide a wide range of supports (money, food, clothing, opportunities for recreation, education, social and emotional supports and opportunities for service).
-As a rule, churches provide these services because a disabled person happened to show up on their doorstep.

These observations reflect some of what is happening now. But what of the future, where are we headed?

I think we are honestly on the crest of a wave that will lead us to a different future for persons with disabilities in local churches.

I can remember as a boy growing up in the 60's the world was a different place in terms of racial integraion. Over the last 40 years though, things have gotten better. The church has become more accepting as evidenced by people within churches becoming more accepting. (I would say, however, that independent of the ethnic make up of churches, the absence of persons with disabilities is pervasive). Maybe it is because I attend a church in Southern California, a place which is truly diverse, but I see more acceptance, more mixing in a variety of ways among ethnic groups. This gives me hope for the future.

I hope for a similar future for persons with disabilities. I observe churches being more open to these people. I know of a church (Crossroads in Corona, California) which has a full time pastor (Julie Keith) to address the needs of people with disabilities, and another church that just hired one (Pasadena Nazarene). I observe a willingness on the part of my own church to make ministry work. To do the extra which is required to include persons, children with disabilities and their families. But we are not there yet.

At my church, we have had a ministry to adults with developmental disabilities for about 13 years. Recently, however, as an outcome of a National Organization on Disability conference we held at our church we have been working to reach out to children. Although I knew there were many who were unable to attend a local church because of the church's unpreparedness and lack of focus, I have been surprised at how quickly these families are coming forward. Our children's pastor reports getting at least 2 calls a week from families asking whether it is true that our church is a place where children with autism (for example) are welcomed. That these families want a church home and are unwelcome because of their child with disability is in my mind flat out disobedience to what the Bible demands of us.

But I can forsee a future where churches will get past their lack of interest, disobedience and perhaps even discrimination and include all people. That they will see people. In the same way that you would visit a church and wonder why there weren't any people from (fill in the blank) ethnic group, you would look around and wonder where the disabled people are in this church. That you would go to a church and notice, "Hey this church isn't accessible to people who use wheelchairs." Your child will come out of Sunday school and wonder where the children with autism or down syndrome were. Can you imagine your child saying, "They don't have any special kids at all in that Sunday school?"

We would be in a place where parents no longer had to rely on the state to facilitate integration for their child through laws (like the Americans with Disabilities act) or through Special Education teachers trying to cajole those around them to accept students with disabilities. No, the church would be leading the way in integration because the kids were growing up together in natural social settings, local churches, where accepting people naturally congregated together. The point of integration would not be the school curriculum where the child with disability may be at a great disadvantage, but growth and development as a Christian, as a "little child" (see April 27 entry). In this area, the person with disability might excell above those without disability. They would then be integrated at a point of their strength.

I hope I live long enough to see that which I feel is just beginning.

McNair

Church or state leadership

Another quote from Susan Dolan-Henderson:
"It is theologically and ethically appropriate to see God as having a preferential option for the disabled and ill, and thus for the church integrally to mirror this preference and work for justice concerning their well being. Throughout the New Testament, the church is called to be a community of interdependence."

I have been thinking a lot lately about the differences between the way the "secular world" interacts, works with, supports persons with disabilities, and the way the "Christian world" does the same. Clearly, the secular is filled with Christians in various positions. I, for example, am a professor at a secular state university. Therefore, arguably the face of that university towards the public, in particular as it relates to the little department of which I am a part, may be impacted positively or negatively by what I do, what I fight for or advocate for. Hopefully we Christians are being "salt." So to separate the two worlds may be somewhat artificial.

I think, however, that it is still useful to look for distinctions between what the state is doing and what the church is doing. Historically, it is important to understand the impact, the effect the church has had on the state. Arguably the church was pivotal in the development of social services both in Europe and in America. Early human service programs of the 1800's were largely facilitated by religious groups. Particularly with the turn of the century and the increased urbanization, churches were being overwhelmed with the problem, and sought help from the state. Social work and human services can trace their roots to church advocacy. Churches were also instrumental in ending sterilization practices in the United States. These groups were very vocal in calling for an end to these abusive and actually futile practices; people with mental retardation in particular were not reproducing.

Obviously other groups and individuals have worked for societal change in recent years, but it seems to this observer that the secular world is currently leading the way. A couple of examples might suffice.

The Americans with Disabilities act focused the nation's attention on architectural barriers to persons with disabilities. I can remember as a young man attending a Baptist church in New Jersey, where the entrance to the church had beautiful granite steps which rose up perhaps 12 feet to the entrance. A wonderful Christian saint and gifted science teacher at our church, who had used a wheelchair most of her life had to be lifted by four men every week up those stairs and into the church. I'm sure Ms. Barto enjoyed getting to know the young men of the church as they did her (she used to wonder why our national anthem ended with a question). But in all the years I went to that church, it never occurrred to anyone that some means of allowing Ms. Barto to enter the church independently might be constructed. I still don't know whether the church is accessible today. National leaders, however, recognized that lack of access is a form of discrimination. Public buildings must be accessible to persons who use a wheelchair. Even the curbs of our cities must allow for easy access.

I was excited recently to see a church in my town installing a elevator. I was excited because I met with them a few years back to assist in thinking through the development of ministries which would include persons with disabilities. They indicated that there was at least one boy who wasn't able to attend the junior high group, which met on the second floor, because he used a wheelchair and there was no elevator. They recognized that something had to be done to either move the junior highers to the first floor, or provide access to the second floor. I haven't been involved with them for several years, but apparently they arrived at a solution.

But I come back to my question of who is leading the way? Who is the example to the other? At the moment I would have to say the state is the leader.

For the past ten years I have traveled around the country doing presentations, mostly to secular professionals about the potential of the church as an agent of supports for adults with disabilities (my focus). You see, the state is constantly on the look out for ways in which adults with disabilities can be supported naturally in the community (I will give you more information about this in the future). I tell them about churches and the potential they hold. Often they are surprised and amazed. I wish I had a dollar for every time someone has said to me, "How come I have never heard about this before?" Well the reason they have never heard about it is that the secular trainers, universities, agencies, etc. don't talk about it (church/state separation, you know) and partially because there wasn't enough to talk about. Notice I keep using the word "potential." But my thought was that if I talked to enough secular professionals who really do want what is best for their clients, perhaps they will encourage churches to do what they should have been doing all along. Ironic isn't it? State agents contacting churches to, in Dolan-Henderson's words
"see God as having a preferential option for the disabled and ill, and thus for the church integrally to mirror this preference and work for justice concerning their well being."

I don't know if I have had my desired impact on state agents or churches. I do think that the church as "salt" in this area, is somewhere between a flavorful spice and tossed on the ground to be trodden under foot.

McNair

Disability as a societal construction

I have been working on a video series about the lives of adults with disabilities. We are in the early stages, but you can get an idea of what it is about by visiting "dislife videos" at my web page, jeffmcnair.com

Anyway in the process of interviewing "Mark" one of the subjects of the movies, I asked the question, "Do you have a disability?" To me the answer is obviously "Yes" as it would most probably be for you as well. However, Mark responded, "I don't know. I try to work hard and I am not as bad as some people and I have friends. I don't know."

So there I was, Mr. Loves the Disabled People, shot down by a guy who felt he wasn't sure he had a disability. I saw him as disabled.

What was my evidence he had a disability?
Well, he had been in special education classes all his life.
His IQ was lower than the average, probably a full standard deviation lower because of the services he was receiving.
He had an assistant who came in to help him with budgeting and shopping.
He had a job coach who made an occasional appearance at his job.
He can't read very well.
His social skills are good, but not perfect.
He received social security income.

What was his confounding evidence which might cause him to wonder whether or not he had a disability?
He tries to work hard.
He has friends.
He isn't as bad as some people (the example he gave was that he didn't use bad language or start fights).
I also observe that he lives pretty much on his own.
He is able to get around the community on his own.
People care about him.
He is quick to help someone out as long as it doesn't interfere with his work hours.
He is interested in his own spiritual growth ("Jeff, do you think I am doing better than I used to be?").

It sounds trite, but I am not so sure he has a disability either.

You might reply, "Well obviously he can't do a lot of the things people without disabilities can do!" (Thanks for helping out with that comment). But I would reply that there are many things I can't do that he can do. He can bench press about 200. I can't. He can work for 11 years collecting carts at a Sam's club store, and go to work with joy, and come home fulfilled. As a university professor, I don't always feel that way. He can trust others in a way I can't. He can live without things I think I can't live without . . . and so on.

Its interesting that at the Department of Rehabilitation (a state agency which assists with jobs and job training) if you no longer need their services, you are said to have "medically recovered from your disability." I like that. So if you are a person with cerebral palsy who goes to Rehab, and they help you get a job, in their mind you no longer have a disability. You have medically recovered.

What would it take for a church to not see a person with a disability as a person with a disability? Is there the possibility that such a person could "recover" from their disability in a Christian church setting? Many of the criteria which cause a person to be labeled as disabled are irrelevant in a church setting. Must a person be able to read to be a Christ follower? What are the entry level social skills required to be a Christian? If there is a difference between the criteria for being a Christian and being a member of a church, should the criteria for being a Christian change or should the criteria for being a member of a church change?

I was once involved with a church where a 60 year old adult with mental retardation was member. He had worked at the local university for 40 years as a pot scrubber. At the church, he was "permitted" to serve communion. He was a real asset as the aluminum communion plates they used sometimes got stuck together, even during the actual communion service. He could pop them apart quickly without spilling a drop or a crumb. One day the leadership of the elder board was changed, and my friend was no longer permitted to serve communion. The reason given to me? "He has the mind of a 6 year old." All those years of competence did not dispell the societal construction that he was a disabled person, not a person.

He was seen as a retarded man, not a man.

McNair

Overcoming a notorious reputation: Roy and me part 1

There is a young boy with Aspergers syndrome who has been attending my church. As with many individuals with disabilities like autism, he has developed a "notorious" reputation in the regular Sunday school class. Apparently he has been disruptive, and has even cut off some hair of a young girl in the class (that appears to be the height of inappropriate behavior that one might engage in). In her wisdom, the director of the children's ministry at the church has been working with parents of children with disabilities and interested others (like myself) to develop programs and other ways to support children with disabilities as they are integrated into the general classes. All that to say, that I am now a buddy in the buddy program for an 11 year old boy with Aspergers syndrome. I want to share that experience with you. I will call him Roy for the purposes of this.

At the close of our class for adults with developmental disabilities (an exciting session with international guests where I discussed the incidences when Jesus showed himself to followers in the 40 days between his resurrection and ascension) Roy's mother met me. We went downstairs to find Roy who I would be accompanying to Sunday school. Roy is an average sized boy, for his age, with dark hair and a friendly face. His eyes are constantly moving to take in all that is going on around him. His mom took a couple of pictures for a Social Story book we are going to work on. He allowed me to greet him with a handshake, and I asked him where he would like to meet his parents at the close of the Sunday school class. We agreed on a spot under a gazebo and off we went.

We entered the stairwell and he charged up the stairs at times on all fours. I did the best I could as a 48 year old with bad knees to do the same, climb on all fours that is, which he appeared to enjoy letting out a laugh. We then entered the classroom and endeavored to sign in. He looked for his name, which didn't appear, and looked at me with a cross between confusion and indignation. I looked for my name which also didn't appear and mimicked his stare. He added his name to the list, I mine. We wrote out our name tags (his mispelled, his real name is a bit more difficult than Roy) and I asked him where he wanted to sit.

All the while I looked to observe interactions between him and those around him. It seemed the others were going about their own business and gave little attention positive or negative. Any looks cast in our direction were probably more related to my 6'7" frame following this boy to his seat. We listened to announcements, he occasionally looking around at the other children or up at me. At times I asked him something about the announcements, and he would provide a brief answer.

When the singing began, I wondered how he would react. To my surprise, he sang. He sang beautifully, although a little behind the meter of the song. As other voices were fading, his was just getting the word to be sung, so it lingered. I did my best to have my voice linger with his. I quickly recognized that he knew little of the words of the song except the last word. I got his attention and enunciated the words for him before they would occur in the song and he appeared to appreciate that, being able to sing more of the words. But his little voice was beautiful! It was high pitched, on key and beautiful.

Generally the pace of the class was fast which appeared to confuse him somewhat, but to his credit he has learned to be still, and let things play out around him. I was impressed at his patience in being in a fast paced environment and keeping his calm. In such a fast paced environment, it is easy to see how children with disabilities such as Roy's might get frustrated and act out. Those working with folks such as he need to set things up for him a bit, and give him the opportunity to process before making too many demands.

As the program continued, students were given food rewards (candy etc.) for completion of various challenges. I had been strictly warned that Roy couldn't have any sweets because of various aspects of his disability, and I noted that there were no treats available that he could have had even if he had earned one. I noticed that Roy looked at the treats, not particularly in a way indicating that he wanted one. I guarantee there will be treats he can enjoy as well in that basket in the future.

We then broke into groups to play Jeopardy. The game was slow enough moving, but was difficult even for me to follow. The rules seemed somewhat amorphous. At one point our group was asked a question which we got right. I did the "raise the roof" gesture to celebrate with the group which he mimicked. Later there was a question asked, a part of which the group couldn't get. The go to answer to a Sunday school question is always, Jesus, which he happened to say spontaneously (I wonder if he understood?), and got right (when the others didn't say it) and he celebrated with me with a high five.

At about that point the class was closed and we went downstairs to meet his parents again. He appeared a bit concerned that we didn't meet in the predetermined gazebo, but he went with his parents and that was it.

Labels mean different things to different people. People need to learn that these labels cause fear to some who use them because of a lack of understanding. Parents in describing their child to churches might consider describing the child's behavior rather than giving the diagnosis. A parent recently told me that his child had autism, adhd, schizophrenia and a litany of other disorders. As a professional in the field, I kind of laughed (the parent was taken aback) at the foolishness in giving a child so many diagnoses loaded with such inflammatory terms. To me it illustrated that those making the diagnosis weren't sure what the diagnosis was, so they loaded on 15 different things in the hopes that one would catch it. Perhaps it helps parents to know that doctors know what their child has, but when you are on the other side, the professional side you realize how silly such information can be. Parents then share those diagnoses with others, and it becomes a situation where the parent thinks he is being helpful, while the church worker is looking for an exit.

Probably every day won't go as well as today. Who knows what mood I will be in? But I was once again struck by this sweet little boy with a severe reputation, and how little it took to help him integrate a bit.

More to come.

McNair

Divergent thinking part 2

Continuing with the ideas of Dr. Julian Rappaport from the previous post, another problem with convergent thinking in human service is that single solutions create another whole set of problems. The menu driven limitations of human service agencies will solve some problems, however, such limited options provided to problems to which the don’t apply, exacerbate some problems and create others. How about an example.

If the only option for Sunday school is to have children sit in large groups on the floor of a room, then there will be many children who will never benefit from Sunday school.
If the only option for ministry to adults with mental retardation is fully including them in the regular adult classes at the church, then some of these adults will never learn about their faith.
If the only option for persons with disability is to go to another church, then there will be many people with disabilities who along with their families will be unchurched.
If the only option for service in the church is something that requires a physically intact body, then those with out such bodies will not be able to serve.
If the only singing, dancing, reading, speaking that is permitted from the stage of the church is perfection, a total emphasis on excellence, then there will be few who can participate.
If the standard for social skill for the congregation is too high, many will be excluded.

In each of the above areas, escaping from the convergent requires creativity. What if there were actually options for children in Sunday school? Options for adult ministry including reverse integration where adults without disability attend the class geared to the level of understanding of those with cognitive disability. I have taught such classes for a long time and I always learn something.

We have to find ways to open up our churches to persons with disability. We need to look for options for service for all members, while at the same time reserving particular opportunities for service, for persons with disability who are perhaps limited in the ways they can serve.

Recognizing that persons like my friend Gavin, an adult with severe cerebral palsy who uses a wheelchair and is blind is a powerful witness when he sings before the congregation. It doesn’t matter that he won’t be releasing an album any time soon.

Also, expanding the range of normal to include a variety of not entirely appropriate social skills which are tolerated (not without efforts to improve them) because it is more important to have the individual at church than it is to have his social skills be perfect before he is admitted. I have had disabled friends with their hands touching or scratching every imaginable part of their body, but I welcome them because after shaking theirs, I can always wash mine.

Be divergent, be creative.

McNair

Divergent thinking part 1

“There is more than one way to skin a cat.” Actually I will have nothing to do with a cat or his skin, whether or not he is wearing it. But to put it another way, we need to think divergently, rather than convergently. “In praise of paradox” is an article by Dr. Julian Rappaport which makes this point. He states that social problems, social issues are different from hard science issues. I can calculate the answer to a Physics problem (well, I cant, but at least I know there are people who can do those kinds of calculations). There will be a single correct and a multitude of incorrect answers. Social issues are not like that. As Rappaport implies, we may come to two conflicting solutions to the same problem. For some people one will work, for others another and for others, neither will work. I think divergent thinking is sometimes difficult for Christians. We will at times carry over our morality orientation towards the black and white to other areas of life. We take differing positions, at times positions based upon interpretation, experience, understanding or knowledge, and assume that is the only correct position.

I recall the pastor of a church I attended for five years when I lived in Illinois stating that if someone really got into the Bible, she would see that the perspective of this particular church was the right one and they would come to believe what he believed. He related how people had come to this church and stayed because they realized that the perspective taught there was the truth! I asked whether anyone had ever left that church for another church. Or what of all the other Christian churches in that community, were all those people disillusioned? The implication of his perspective was that they had all fallen away. Of course I am not saying that anything goes, however, I have come to believe that people can have a different perspective from me on a world of issues and still be Christian.

This same point is true of ministry to people with various disabilities. The church can fall into the same problem that the state has fallen into in that it offers a limited menu of services. You can use those services or you can go home. It’s like going to McDonalds and trying to buy a hot dog. You aren’t going to get a hot dog at McDonalds, so if that is the outcome you desire, you will not be able to reach it.

I have taught a class at the university on the portrayal of individuals with disability in film. Just like in all the Disney cartoons the mother dies, in most disability movies, the professionals look foolish because they offer services which don’t meet the need. Some examples:
In Benny and Joon, the psychiatrist wants to put Joon in a home, instead she lives on her own.
In Cuckoo’s Nest, Nurse Ratched wants McMurphy to be the model patient, when through his antics he frees the other patients, particularly the Chief.
In My Left Foot, mom keeps the gifted Christy Brown, a person with cerebral palsy at home and educates him against recommendations.
Similar themes arise in Lost in Yonkers, or Slingblade, or Dominick and Eugene or The Other Sister, or Rainman.

The messiness of human service makes us uncomfortable. You can’t send the autistic boy to the Sunday school class like you would the cute little nondisabled youngster. The adult with mental retardation cannot always be expected to sit quietly in the church setting. The other day at our church, a developmentally disabled adult happened to stand up (he was sitting in the front row) at just the moment the pastor began to preach. He stood there for about 5 minutes looking up at the pastor as he spoke, and I am sure that he thought the pastor was talking directly to him. Finally the light came on and he sat down.

That is the problem, but that is also the excitement. Work with persons with disabilities is filled with challenges and the unexpected. Social skills are up for grabs, and the traditional menus which churches have used for ministry can be tossed out the window because many disabled persons are living under a different set of rules, rules that they don’t even understand.

So, creativity is the mark of the special educator, or the person in ministry to persons with disability. Convergent thinkers need not apply.

McNair

Levels of Support

Dr. Julian Rappaport is a famous community psychologist. I discovered his writings nearly 18 years ago, and read whatever I can find that he has written. I suspect he will be often cited here in the future. Unfortunately I missed the opportunity to study under him while I was at the University of Illinois.

Dr. Rappaport writes about what he calls the "Levels of Intervention Analysis." He says that minimally, one might intervene, do something to alter, support, or facilitate change at the . . .

Individual Level
Small Group Level
Organizational Level
Societal Level

Imagine these levels as concentric circles with the individual level in the middle, working toward the societal level on the outside. Interventions at each outer level effect the inner levels they contain and ultimately the individual.

We might help individuals by doing some of the things discussed in other places in this blog. We might support small groups who help individuals. People give money to the disabled ministry staff, etc. We might help at the organizational level by encouraging churches or denominations to institute rules or procedures which would provide support. We intervene at the societal level by attempting to influence societal attitudes or changing laws that might help.

At some point it might be interesting to develop a "Christian Church Report Card" and grade the church in each of these 4 areas. I would challenge you, however, to try to think of examples positively and negatively of how the church is doing, or how you personally are doing. Email them to me if you would like. mail@jeffmcnair.com

So . . .

What do you do on an individual level to support persons with disabilities? Your efforts might begin by seeking out and getting to know someone with a disability.

What do you do on a small group level? Does your church have some kind of outreach ministry to persons with disability? If not, perhaps you might suggest it and volunteer. Even if the Lord has called you to a different area of ministry you might do what you can to support the disabled emphasis. I personally am not involved in foreign missions, however, if my church did not have such a focus, I would feel it should be added and individuals recruited to staff it. I can also provide supports to that ministry to do its work. Work which ultimately affects individuals.

What do you do at the organizational level? Do you even know what policies your church or denomination has toward persons with disabilities? Will you wait till you, a family member or someone close to you experiences disability before you will care? Although I don't blame them, it is sad to me how many parents of persons with mental retardation have no knowledge of people with the disability till their child was born. I am not talking about the high level of expertise parents develop throughout their lives as parents. But more that they knew there were mentally handicapped people out there and they knew that they had families who might be experiencing a variety of issues, but they will admit that they, well, they kinda didn't care. It was not a part of their world. This is an indictment of the church at the organizational level. How might you advocate for a more inclusive perspective in your particular church or denomination? That will also impact individuals.

Then, on the societal level, what motivates you to get involved politically? Is who will tax you the least? Do you think about how politics can impact the environment in which the church does it's work? At the moment we are focussed on areas of disability. I suspect you are reading this because you have an interest. Do you know what President Bush or Candidate Senator Kerry think about disability? What have they done in these areas? I will not make this into a political advertisement for one or the other, however, whoever is the president has the potential to make a significant impact for change on the societal level. Their decisions will affect individuals.

We should also pay mention to the media. Several examples should suffice. What about the programs you watch on the television? On the left politically, Bill Maher (I believe that is the correct spelling) has compared persons with mental retardation to household pets. On more of the right, Dennis Miller said that the terrorist leader who was recently killed by Israeli missles was basically done a favor in allowing him to excape his existence as a parapelegic. In each of these cases, these celebrities are having an impact on the way persons with disabilites are perceived by society. Without refutation, these kind of comments are left standing.

By contrast, David Hyde Pierce (Niles Crane on the television program Frazier) has been a strong advocate for persons with alzheimer's disease. Recently, on the occasion of his birthday, there had been attacks on President Reagan by comedians regarding his alzheimers disease. Once again, without entering into the policital fray (I have no idea what Mr. Pierce's political affiliation is) he stated that there are two types of people who make jokes about others with alzheimers. First, there are those who have never experienced the disease. Wisely he says he hopes they will continue to be able to make such unkind jokes as that would imply they have never experienced the disease. May they live on without ever having to face the ongoing debilitation and humiliation of one you deeply love. Second, are those who make jokes to try to ease their own pain or the pain of their loved ones who do have the disease. Such a perspective has the potential of a significant impact at the societal level.

So think and act creatively but with an eye toward formative evaluation of the church.

McNair

Reject the lies and work the works

Susan Dolan-Henderson in her article "Mainstreaming Justice" (Sojourners, 2000) makes the following comments.

"Need and dependency are so hated by our society that euthanasia and assisted suicide have been put forth as better alternatives than interdependence. We need health care, pain control, and support for families to empty euthanasia and assisted suicide of their terrible attraction." How evil that people will come to us, to our American society and say they are in pain or depressed to the point of wanting to take their own life, and we reply, "I'll help you take your life." In effect we say, "You are right. You are not worth any effort from me or others." Not all of these people are on their death bed. As a respected friend of mine, Dr. Rick Langer once said to me, "These are not people who are sustained on life supports, they are those who if they are not killed today, might go to McDonalds."

Then later in the same article she writes,

"We are all only temporarily-abled. Illness and disability can strike at any time. The disabled and chronically ill remind us of how much in life is beyond our control. It is theologically and ethically appropriate to see God as having a preferential option for the disabled and ill, and thus for the church integrally to mirror this preference and work for justice concerning their well being. Throughout the New Testament, the church is called to be a community of interdependence. Care of the chronically ill and disabled is not a none-way street."

Perhaps as an American, or perhaps just as a person, I resist the above statements more than I care to admit. I think I would do just about anything to be able to die quickly. Not because I necessarily fear death, but because I don't want to be a burden to my family. I don't want to be dependent on others in any way because dependency is weakness, and as a MAN I don't want to be weak. I am happy to help others who are disabled or weak, but I don't want to be in need of their help because I am disabled or weak. The Bible tells me God's strength is shown in my weakness, but I think that deep down I think God's strength is shown in my strength. I think I might actually hate some forms of weakness. God tells me that the first will be last, but I think that the first will be first. I see the way Jesus responded to his critics while I in my bravado study to devastate my detractors with a witty counter attack.

"For what I do is not the good I want to do; no, the evil I do not want to do - this I keep on doing" (Romans 7:19).

I have bought the lies. . .

My wife's grandmother, a woman who is a true servant of God, raising Godly boys, and impacting our family for what I suspect will be many generations (the Lord willing) is dying as I write this. Her malady has been progressive in nature. Family members have used this opportunity to visit with her, help her, love her. I don't know how aware she is, but I hope she has awareness of these people who love her as they gather around. In better days, she was a person who always did for others. Her sugar creme pie was the stuff of legend. Through her life ending disability, God has provided the opportunity for her loved ones to gather around her and support her, the opportunity to manifest the works of God in her (see April 26 entry). We have the opportunity to work "the works of him that sent me, while it is still day."

While it is still day.

This part of the verse hit me. I have the opportunity to work the works while it is still day for me, and I have the opportunity to work the works for disabled individuals like my wife's grandmother while it is still day for her, and I have the opportunity to work the works while it is still day for the world.

So reject the lies and work the works while it is still day.

McNair

Sheep and Goats

Once section of the Bible that is often mentioned in reference to working with persons with disabilities is Matthew 25:31-46 which is the section about the sheep and the goats also known as the passage relating to the "least of these my brethren." I have to admit that I have a bit of a problem with the manner in which this passage is so often applied to persons with disabililties. Not so much because we can't assist them, but because they are immediately identified as the "least." I don't think of them as the least. I guess it isn't always easy to determine the least, as it is at times hard to distinguish sheep from goats, at least for some people.

I once had a little pigmy goat that my family gave me for my birthday. I called her Precious (she was my precious, my birthday present, if you understand that allusion, I am glad to know there are others as goofy as myself about particular literature). Anyway, I was surprised at how people would look at my goat and think it was a sheep.

It is interesting in this passage the way the responses between the sheeplike people is differentiated from the goatlike people. The sheep repeatedly use the word "you," in "when did we see YOU hungry and feed YOU . . . see YOU a stranger and invite YOU in (caps added)." The goats say, "when did we see you hungry or thirsty or a stranger . . ." simply listing the litany. Do you catch the subtle difference?

The implication in the sheep is that they saw those needing the types of assistance listed, and helped them, but they didn't see Jesus specifically. The implication for the goats is that they didn't see anyone who had the various needs.

Matthew says,
"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."

Reading that passage, come to think of it, I change my mind on that whole least thing. I kind of like the fact that people associate the "least of these," with persons with disabilities. I say that because, if people are Christians with any experience with their Bibles at all, it would mean that they are associating persons with disabilities with the King, or Jesus.

But I wonder what will you do with the King in your midst? Could someone observing your experience with persons with disabilities tell whether you are a sheep or a goat?

McNair

The "bleedin' obvious"

In the British sitcom, "Fawlty Towers" Basil Fawlty (John Cleese)makes the comment ostensibly to his wife (but actually under his breath)about an observation she has made. He states, "Contestant, Sybil Fawlty, category, the bleedin' obvious."

Sometimes, people's questions of how to act toward individuals with disability although seemingly unknown to them, to me is the "bleedin' obvious." Recently a woman friend of mine made a presentation to a group of women at a Christian women's retreat. When she concluded, a participant raised her hand with a question. She asked, "A disabled woman attended our church, and even became a member, but we haven't heard from her lately. What should we do?" For a moment my friend was taken aback. "Well, do you have her phone number?" "Yes" the woman replied. "Well, why don't you call her?" At that the woman took out a pen and paper and wrote the suggestion down. "Maybe you could take her out to lunch." "Wonderful" the woman replied excitedly.

For some reason, common sense goes out the window when people with disabilities are involved. Should a friend of ours need a job, we respond that we will do what we can to help. However, should that person use a wheelchair, we ask if he has contacted the state agency that assists with job identification. I even knew of a situation where a young woman with mental retardation was sexually abused and raped. The people at her employing agency just sent her home that Friday because the state agency who works with disabled people wasn't open till the following Monday.

A friend of mine, an intellegent doctor once said to me that he would love to help out adults with disability, but he didn't have any training. He honestly felt he didn't know what to do.

However, I have seen glimpses of the same helplessness in myself. When I was a church leader, a family in our church was rocked by the husband being arrested and sent to jail. When asked what I might do to help this family, the words came out of my mouth, "I don't know how to work with the family of someone who is in jail." Almost as soon as those words escaped my lips, I recanted saying, "Well, I guess they will need help with child care, and with basic home repairs, and maybe money will be a bit short." Even with the most rudimentary thought one quickly comes to solutions.

Yet at times I think Christians don't even give interactions with persons with disabilities the most rudimentary thought.
"What do disabled people need?" they might say. Well, probably somebody to give them a call now and then, or take them out to lunch, or give them a ride to the mall, or include them in a holiday celebration.
"But what would I say?" they might say. How about, how are you doing, or did you see the Lakers game, or nice weather we are having, or tell me about your family.
"Should I help a person who is blind with their lunch, or a person who uses a wheelchair with the door?" they might say. How about asking, do you need some help with your lunch or with the door?

Innumerable other situations might be imagined with equally difficult answers. "What if they spill their food?" Maybe clean it up. "What if they fall down?" Maybe help them get up again. "What if they use bad language? (those with emotional problems)." Maybe tell them, please don't use bad language. "What if they need something?" Maybe ask them what they need.

Sometimes I feel like Basil Fawlty.

McNair

Changing perceptions to reality

Seymour Sarason the 'father of community psychology' along with John Doris wrote in 'Educational handicap, public policy and social history' (1979)
“Behind all the ways physicians view the retarded infant is the assumption that it creates a social-interpersonal disaster. This ‘diagnosis’ says far more about the value systems of our society than it does about the retarded infant.”
In 'Disability, cultural representation and language,' Barnes (1995) writes,
“In most developed societies it is now widely recognized that the severe economic and social deprivations encountered by disabled people cannot be explained simply with reference to individually based functional limitations.”

These two quotes, separated by 15 years indicate how the perception of an individual influences the life experience of that same individual.

In the first quote, we see the notion of a family member with disability as a disaster. It will take a wise family, who, at the birth of an infant with retardation are treated with pity, comments about how the family will be prayed for, that the parents or child are somehow special, specially selected (or some other inanity), are able to see past all the furor to a reasoned understanding of their disabled child.

Unfortunately no preparation comes with a disabled child's birth. Parents and families are forced to rely on the limited experience they have gleaned from life up to that point. Sometimes there is real life experience with a friend, or family member with disability. More often, perhaps, honest parents of children with disabilities will relate that they gave little or no thought to children with autism or mental retardation in their community until their child was diagnosed with such a condition. That this would be the experience of unchurched community members, from a Christian perspective, might not be surprising. However, for Christians to share that same lack of experience or concern should cause Christians to pause.

A lack of knowledge or experience would imply that persons with disabilities and their families have not been in the "congregational midst" in the local church. Should a child's only knowledge of people with mental retardation or other disabilities be what she learns in the public school setting? Interesting how this important aspect of moral understanding hardly appears on the radar screen of Christians.

In the second quote, we see that the experience of persons with disability cannot be explained solely on the basis of their functional limitations. That is, it might be concluded that their experience has been imposed upon them by society. I am reminded of the days when it was thought that persons with down syndrome were unable to learn. You might reply, "I don't believe it. When did that happen?" Well as recently as 1972 there was a court case in which the State of Pennslyvania took the position that a child with down syndrome could not benefit from a public school education. Ultimately the court decided that it was easier to attempt to educate such children than it was to prove they could not be educated, and special education as a right was born (public school education became a right in 1979).

The individuals who were ultimately educated, who learned to read, and develop skills sufficient to be employed and live on their own were the same before and after the court case. What changed were the opportunities provided and the perceptions of the people around them.

In each of the quotes provided, the authors are advocating change in the environment in which persons with disabilities find themselves. To what extent is the local church a positive or negative reflection of prevailing cultural values about disability? How might a Christian community be different such that the life of an individual with disability is not a family disaster, or limited by anything other than the person with disability's own functional limitations?

McNair

Environmental influence on the works of God

Matthew 9:1 speaks of a group of friends bringing their paralytic friend to Jesus for healing. The verse then states, ". . . And seeing THEIR faith . . ." Jesus then went on to heal the man. Mark 6: 5-6 says, " . . . And he could do no work of power there. . . And He marveled because of their unbelief." Apparently the environment has some effect on the "ability" of God to work. The first quote says seeing THEIR faith, that is, the faith of all of them, both those who brought the man and the man with disabilities himself, the healing was performed. An example in the positive. The second quote relates how no work of power could be done because of the lack of faith that was evident there.

Now I don't want to read too much into these examples, however, there does appear to be a principle evident here, in that the environment affects the "works of God" (see April 26 entry) that might be evidenced.

I wonder how the environment of "the church" today influences the "works of God" which can be done among persons with disabilities? To even begin to do the works of God, the church must be open and including of people with various disabilities. The paralytic man probably would have never been healed if his friends had not brought him.

McNair